what would you do? what should I do?

[gothiclovemonkey]

Im really not sure where I should post this
As some of you may know, ive recently had a horrible experience with my dialysis clinic and my neph...

Long story short, due to them not listening to me, and telling me im basically crazy and just have some anxiety, I ended up in the hospital with fluid surrounding my heart. a week straight getting dialysis every day they removed 12.5 kilos (its probably actually more than that, but the pain meds have a horrid side effect causing me to be severly constipated, and i havent gone since the 27th of dec...) and im finally home after being in the hospital since dec 29th. I still have some fluid that needs removed, but im out of the serious danger zone, so to speak.

Many people have suggested that I file a complaint, some even suggested suing.

I would definitely like to pursue filing a complaint, but where do I start?
My clinic coordinator is one of the persons who was involved in it, so i cant hardly go to her...
As was my neph (who i am switching as soon as possible. Ive already found another dr, i just have to make it so with the clinic now)

Im really unnerved by all of this, and im really unsure as to what to do and how to go about doing it.

Id like to say im not really the type to sue someone for just anything, so in my head i really dont feel thats the way to go, but id like all input i can get on the matter to make an informed decision. If it will help other not to suffer the same fate, id do it.

This clinic is horrible, it was horrible before, and I had heard it had all new employees for the most part, but its still just as bad, if not worse than it was before.

My experience the last few weeks before my hospitalization was horrible and very scary. I posted about it previously.

Please, any info or advice is much appreciated.

[Shaks24]

I think your top priority should be to focus on making changes that protect your health and well being. It sounds like you have started the process. I had congestive heart failure in 2011. I understand how it feels to have so much fluid on the heart that you can not breathe. It is scary and does induce panick. I imagine your BP shot up too. Focus on your health first then figure out how to properly file a complaint if the team behaved negligently in your care. So glad to hear you are feeling better. It took 5 days in the hospital to get me stable in 2011.

[gothiclovemonkey]

I went to see my therapist today, who i think gave me some really good ideas. First of which was to call davita tonight to set up some kind of a meeting BEFORE i hook up to the machine tomor. I did this... At first I was getting very flustered, because again it seemed i wasnt being heard, just talked over, but eventually i think we got to a better place. Ill be going in early tomorrow to have a mini conference, and begin the complaint to be filed. And also express how I feel (in a kindly matter)
One thing that she said to me though, im not sure about is that there is a difference between a complaint and a grievance, so which should i be doing?

The clinic is pretty much blaming everything that has happened on my current dr, and I do think MOST of this is on him, because they cant go against drs orders... i DO understand that, but some of the attitudes and words and actions taken during the passed few weeks are NOT related to the drs, so that will be addressed tomorrow.

So I really think that if anyone needs sued it would be the dr, not the clinic, but they definitely need to hear me out and know they too did things wrong and need to fix it now before someone who isnt so kind really throws punches.
She also said, if need be, i can wait to make a decision as far as any type of legal action, which i think is best. WAY too many people are quick to sue these days, and if it isnt needed, i see no point in it.

They better frickin listen now, or I wont be so kindly! Ive told them from day one, im Not a cookie cutter patient, and I am a weirdo, so tonight im talking to her, she says, Well dont take this the wrong way but you arent clinically presenting like most patients would......... NO S**T SHERLOCK ive only said that for 3 freakin months!!!!!!!!!!!!!!!!

It just irks me to no end that this all could have been avoided had they just heard me from the begining.
I cant imagine how some people get treated, and probably DO die as a result of something like this... I was close, and thats more than I ever want to be again! I am still nervous about the whole thing... going for treatment tomorrow, dealing with the process of switching drs, filing the complaint, etc... I really DO NOT know what im doing...

[okarol]

Filing a Complaint Concerning Dialysis or Kidney Transplant Care
Medicare has health and safety standards to protect you.
http://www.medicare.gov/Publications/Pubs/pdf/11314.pdf

[gothiclovemonkey]

Today I had the "meeting" it was me and the coordinator, and the secretary (she just sat in)

It was weird... they thanked me for teaching them.... they said they learned a lot from this experience. *shrugs* i kind of think they were trying to butter me up really, but maybe they meant it, i dont know.

the thing that now has me bothered. She said that my current dr, and the dr i intend to become my new dr want me to talk to the current dr about what has happened... and "try to work it out" and if i still chose to switch, i can....
I dont trust the guy, I dont care if he was "frustrated that day" i still dont think refusing to see me was what a good dr would have done...

i really dont know what to do... i dont want people to get in trouble, but i also dont ever want my, or anyone else, life in danger like that...
so confusing for me.

[obsidianom]

Today I had the "meeting" it was me and the coordinator, and the secretary (she just sat in)

It was weird... they thanked me for teaching them.... they said they learned a lot from this experience. *shrugs* i kind of think they were trying to butter me up really, but maybe they meant it, i dont know.

the thing that now has me bothered. She said that my current dr, and the dr i intend to become my new dr want me to talk to the current dr about what has happened... and "try to work it out" and if i still chose to switch, i can....
I dont trust the guy, I dont care if he was "frustrated that day" i still dont think refusing to see me was what a good dr would have done...

i really dont know what to do... i dont want people to get in trouble, but i also dont ever want my, or anyone else, life in danger like that...
so confusing for me.

Before commenting on what you might do, I am interested in what exactly occurred. In other words how did they screw up so badly on your fluid gains to the point of danger. I would want a complete and thorough explanation of exactly what they were thinking and how it went so badly. That would include specifically the doctor and why he didnt see what was occurring before you ended up in the hospital. His expalnation might give you the basis to decide whether to see him anymore or switch doctors. If he can explain this and what his part was and then apologize for the result , then perhaps you can go on with him. If he doesnt seem to understand what went wrong or his part in it or apologize, then its time to switch doctors.
Obviously some major miscalculations were made . Its up to them and him to explain it and how it will be avoided in the future. An aplogy also goes along way.(as long as its sincere).
You dont really have grounds for a law suit based on the outcome as you are ok now. The law requires damages in addition to mistakes being the proximate cause of the damage. Also simple mistakes are not grounds for malpractice. The mistakes must be outside the standard of care. Thats a hard hurdle to overcome. Most suits are thrown out or lose. You are better off using this to help straighten out these people to improve your care in the future. This may actually work to your advantage as they  may be extra careful and considerate of you in the future. (of course they should have been anyway).
Try to use this experience to improve your care and perhaps help some others they may do better for because of you.

[gothiclovemonkey]

Thats what i was saying, I dont want to sue really, im not looking for a monetary gain, but i DO want to be sure they learn from this, and it doesnt happen again to me or anyone else.
But I also dont want this to be one of those things where they get a slap on the hand and go right back to treating people like that...

The Coordinator told me that most of the issue was the fact that 7 years ago (when i started d) I was a horrible non compliant patient, they read that in my file, and assume im still this way. (i swear, she said "Ive read that about you and havent seen you act that way since you have been with us..." ) And I havent been like that since I left them the first time. I got into a new clinic, got myself a therapist, and i think ive been pretty damn good since. Except the diet... I do sometimes struggle with phos. but I am honest about it at least!)
Also, that I am "not presenting clinically like a normal patient" I would cramp on the machine, making them assume it was removing too much (even though ive told them every time since i started there that the drs at the other clinic had already thought the cramping was not related to dialysis in any way.)
Ive told them many times I am not a normal cookie cutter patient. I never have been, I am the weirdo who gets the odd stuff. and I rarely fit into the normal.

I know I dont trust him, and the fact he refused to come out and see me that day is what has me most bothered about him. I dont want him as a dr, but I did agree to talk to him. Mostly to let him know how that made me feel so maybe he will be more aware of himself in the future, with other patients. The Coordinator said that he was "very frustrated" that day. Is that really a good reason to be a jerk to your frightened patient?

I noticed yesterday, they are already treating me differently in a bad way at d.... I dont want them to fear what i might do, thats just silly. i dont want them to have to go to the coordinator every time i have a bp drop or whatever and waste 5 mins getting permisson to do something. or when the nurse went to move my chair while i was in it, she had to kick at the breaks, and said "im not kicking you i swear, just moving the chair" it just felt kind of... snide? like id complain about it or something? maybe im just being overly sensitive now? idk.

[KatieV]

I don't have any advice for you, but I sympathize with you.  I, too, am not a cookie cutter patient.  I think my new doctor understands (he calls me "fancy" - which is nicer than "difficult").

Keep on the doctor and dialysis team.  Is there anyone who can come along when you meet with the doctor?  Even if it is someone who only knows the basic story, it can help to have another body in the room. 

[MaryJoe]

If you do not trust him, you can not keep him as your physician. That seems pretty basic to me. Trust is crucial in a patient-physician relationship. How do you honestly communicate with someone you don't trust? How will you not second guess every order he gives about your care? How can you count on him to show up if you have another crisis? I agree he owes you a written explanation and apology, but I could ever have a physician that I did not trust.

Take someone to the meeting with you, it may get emotional and be hard for you to remember all the points you want to cover and the questions you want to ask.

[slipkid]

You dont really have grounds for a law suit based on the outcome as you are ok now. The law requires damages in addition to mistakes being the proximate cause of the damage. Also simple mistakes are not grounds for malpractice. The mistakes must be outside the standard of care. Thats a hard hurdle to overcome. Most suits are thrown out or lose.

I believe that is the worst advice I have read on this forum.  How can you from a distance diagnose whether any damage has been done?  There appears to be  mental distress from what the poster has written and THAT IS a basis to seek damages.  I suggest you confine yourself to medicine and not the law.

[Sugarlump]

My advice, when things start to go wrong is to put a complaint in writing.
They can't ignore your voice then and it gives you time to state clearly, on paper, the issues and how you feel.

I agree with you, when things go wrong it IS important to make an official complaint, if only to protect others and raise standards.

I have had quite a few battles with my centre (UK) and although I wouldn't say I have won, standing my ground has brought about changes for the better.

But your health comes first. Make sure you are being treated properly by your Doctor and your Centre.
You deserve no less...